How would someone with moderate to severe Fibro know if they ever got some other serious disease? We feel like crap most of the time, the symptoms vary from day to day and the pain hits my legs one day then my back and neck the next.
i have every issue that lasts a week checked out. seems to work for me. yet after so many years i can tell if its fibro or something else going on. usually i am right. i have blood work done every 6 months for routine things and once a year for things like lupus.
mostly i don't allow myself to freak out at each change. i did at first. not one of my best moves. now i just wait and see, did it last a week? okay off to the doc. thankfully he loves me and is cool with me showing up whenever i feel the need. he also orders any testing i want whenever i want. that helps me feel peaceful inside.
GREAT QUESTION!!! I've been wondering the same thing. I have an appointment in a couple days to talk to my doc about this very issue. This time, I am going in with a list! I have been teated for just about anything I can think of. I am going to ask him to schedule a LP. I know it sounds a little 'out there', but I NEED to know I do not have lupus or MS! I know what I feel and I am not 100% convinced it's ONLY fibro! Too many problems for too many years. If the tests are negative, then I will FULLY ACCEPT it.
Hi I have had fibro since 1986 and it was stable until I was injured at work in 2005 requiring back and wrist surgery. However, I have symptoms that are scaring me alot and I don't accept my new rheumotologist saying it is just the fibro progressing and being 7 years into menopause. I have severe body cramping, body swelling, like a vice around my upper ab, neck vein swelling, tremors, numbness, spasms, tingling, rashes, renauds to name a few things. I also lost the vision in my left eye for a few minutes prompting a ct scan that indicated multiple unusual calcifications in my brain. That led to ms testing. So far everything is negative. I do have sicca syndrome but because my blood work for sjogren's is negative, dr doesn't think I have it. A possibility is arachnoiditis. and that can go along with fibromyalgia, so I will see another dr.
So even with all the testing, tests aren't always conclusive and so the search goes on. It is frustrating and scary as I sometimes think drs just say fibro and want to stop there.
YES!! l had fibroids, ovarian cyst, adhesions, endometriosis, wear and tear in spine and shoulders straightening of lower spine and yes it was all ignored for years!! Just had a hysterectomy now if you think something is wrong dont give up cos if your docs are like mine then the fibro will get the blame for everything !!!!!!!!!!! Mine even said to me now we know its fibro will you accept it? Grrrrrrrrrrrrrrrrrrr!!!!!!!!
i have my LP done every year just like my mamogram. perhaps a shopping trip for a new doctor is in order?
bug your doctors. it's what we pay them for. advoctate for you!!! nobody else is goin to do it for us. don't ask, tell. if you ask for a test they have the option of saying no. if you tell them, well, it works for me. hope it will for you!
ps. tho i do have a well trained staff of doctors. hand picked over the years for their lack of ego, ability to listen and follow my lead, sense of humor and knowledge.
Last edited by bluelakelady; 06-12-2010 at 07:22 AM.
Reason: add post script
niecey, I have a hysterectomy scheduled for next month. I have had pain in my side for 2 years and even though tests are negative the pain is right over my appendix. However, in the last two months a 2.3 cm cyst grew on my right ovary. I told the obgyn the pain is now in my groin. He said the cyst shouldn't be causing the pain. Afterall I do have fibro....grrrrr. He said he will take everything out since I have a history of fibroids. I agreed if he would also remove my appendix.
Hi Mel l used to post here alot with all my moans and groans! I too had a 3 inch right ovarian cyst which was only discovered after l collapsed through the night after going to docs over and over again for what l thought was urine infections! Also pain when l was weeing in right side really bad it was made me sit bolt upright.... anyway had a laprascopy done 6 months after cyst was found and they found l had lots of adhesions lots of organs stuck together in pelvic area.... so l was told l needed a hysterectomy. After the hysterectomy l found out l had loads of endometriosis and fibroids too!! The surgeon said you must of been in lots of pain YEA been telling you all for years grrrrrrrrrrrrr. I thought after all the gyny stuff was discovered and dealt with it would make a difference to the back pains etc but it hasnt so l still have fibro as well as wear and tear in spine shoulders. If you want any advice about the op just ask would be pleased to help you I did complain about them ignoring my symptoms and blaming everything onto my thyroid/fibro l did get an apology... for what it was worth! Nice to see a few familiar names here again x hope everyone is ok? x Just want to it is common for women with fibro to have endometriosis!! Have a search you will be amazed!!!!!!
Last edited by niecsey; 06-13-2010 at 01:05 AM.
Can Fibro Mask other illnesses...I wonder about that too.
I see alot of you have ovary issues and Endo issues. I wonder if that does come along with the Fibro. I had a hyster 5 years ago due to Adenomyosis (internal Endometriosis) and cysts up to the size of 8cm on my ovaries.
As far as other illnesses..well, has anyone had there TSH levels checked? Mine is borderline high, and I have to be tested again in 3 months, if it is the same or higher I have to go on a med for my Thyroid...UGH I looked up symptoms of Thyroid problems and it is alot like Fibro, but then again so is Vitamin D Difficiency and I deal with that too.
I really wonder if alot of this is all linked together. You may NOT get every single health issue , but I realy wonder if there is a connection somewhere????
Hyster-PCOS, Adeno,everything but Cervix removed
At 41 Fusion-C5toC6toC7 with Hardware-DDD Arthritis in Spine-Herniation C4-C5-w/mild comp on Spinal Cord, OA, FM, Raynauds,Hypo,HBP,TACHY
I don't do diagnostic testing any more. I had bloodwork, assorted x-rays and MRI's, I saw about 10 different specialists, and all they found was the fibro. I have a few other medical problems, but those are separate and being treated separately.
The reason I don't do diagnostic testing is because I just found it too stressful and upsetting. I'm in a pretty good place mentally with my pain, and I don't want to disrupt that by going back for more tests. I actually told my doctor that, when he wanted me to have an MRI to check for something that my symptoms really weren't consistent with at all--just to rule it out.
Not everything is fibro, of course. If you get a new symptom, and it is bothersome and persistent, get it checked out. One member here suggests waiting a week before pursuing it, and that seems like good sense to me.
(Obviously, if you think you are having a heart attack or something, don't wait a week. But with, say, a sore elbow, you might as well.)